Practical Guidance

Practical Guidance

If you have M.E., the following might help you practically:

1.G.P.

Try to get a supportive G.P. They are the gateway to much needed benefits. If you can’t get a supportive G.P., empower yourself with knowledge about M.E. If you’re too ill to do this, encourage your carer to do this for you. Do be aware that in your search for knowledge, you will find a lot of lies written about M.E./CFS, especially of the psychological/psychiatric kind.

2.Canadian Guidelines.

Get yourself a copy of the Canadian Guidelines, proper title, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners (authors, Carruthers and van de Sande), published 2005. These, along with the International Consensus Criteria, are probably the best medical guidelines for both doctor and patient. They can be downloaded from this website under 'Links'; alternatively, you can buy a hard copy for under £2 from Invest in M.E. at info@investinme.org, or phone 02380 251719.

Why not give a copy of either the Canadian Guidelines or International Guidelines to your G.P?

3. The New International Consensus Criteria for M.E.

This is an even more recent criteria (2011) than the Canadian. It separates M.E. as a distinct entity from CFS. The International Criteria (Adult & Paediatric) can be purchased for £1.00 from Invest in M.E. (hard copy): info@investinme.org or phone 02380 251719.

Alternatively, it can be viewed and downloaded at National Alliance for M.E. (USA) www.name-us.org

4.Hospital Booklet.

You might find a hospital booklet helpful, for M.E. sufferers, which can be downloaded from this website under 'Documents', or contact us for a hard copy at info@thegracecharityforme.org This booklet mentions drug and chemical advice etc., should you need to go to hospital, even as a day patient.

5.Treatments.

There are some treatments, mainly supplements, which might be worth trying.

If you think you have true neurological M.E., then it’s best to avoid Graded Exercise (a popular therapy) as it could ultimately make your illness worse. Also, beware of another popular therapy, CBT (Cognitive Behavioural Therapy) which often involves Graded Exercise. For further scientific findings and patient surveys on these therapies, please see our paper Saying No Can Be Positive, under 'Documents'.

Never push yourself to the point of exhaustion, physically or mentally. A general guide is to do less than you are able to do, so that your body won’t ‘crash’ (relapse).

6.Helpful Doctors.

The current NHS treatment for M.E. (called Chronic Fatigue Syndrome by the NHS) is mostly Graded Exercise and CBT, sadly. You should also be able to get medicine on the NHS to help with pain and sleep control. Regarding other treatments, e.g. supplements and drugs recommended for M.E. in the Canadian Guidelines, it really depends on your GP if they prescribe them on the NHS. Their hands, though, are greatly tied by the NICE guidelines (National Institute for Health and Clinical Excellence) which currently doesn’t favour treatments outside those previously listed. However, a GP can prescribe a drug outside the NICE guidelines for any patient on an individual basis, if he/she feels it would be appropriate. The GP would have to record why they have taken this action.

All GPs and consultants differ in their treatment and attitude to M.E. patients. If you feel that you’re not getting anywhere with the NHS, there are some ‘tried and tested’ private doctors who have helped some M.E. patients over the years.

DR. SARAH MYHILL (private treatment). Although Dr. Myhill prefers to use the term CFS, she has nevertheless helped some patients of genuine neurological M.E. She offers a test called the Mitochondrial Function Profile test which she believes is helpful for M.E. sufferers. It actually includes seven tests and will involve blood test(s) which are then sent through the post. More about this test can found on her website www.doctormyhill.co.uk Click on Fatigue and then go to Tests. The Mitochondrial Function Profile test currently costs £295 which also includes a letter to your GP. (The mitochondria is the energy producing part of the muscle.) Dr. Myhill often suggests treatment with certain supplements.

DR. WILLIAM WEIR (private treatment). Dr. Weir treats M.E. from a biomedical perspective. His basic consultation is £250 which includes a letter type summary of his findings. More extensive reports would be around £500. Further tests can be arranged, should he feel they are necessary, either on the NHS or privately.

Dr. William Weir

10 Harley Street

London W1G 9PF

Tel: 020 7467 8478

DR. RAYMOND PERRIN (private treatment). Dr. Perrin has developed a technique for M.E. sufferers call The Perrin Technique. It is an osteopathic approach, which may include some massage, to help drain toxins from the body. (If you're interested in this treatment, do inquire about possible pressure on your muscles if you're sensitive to touch.)

There are practices outside Manchester. Currently, Dr. Perrin charges £200 for one and a half hour consultation in Manchester. He sometimes comes to Hertfordshire, where he charges £250 for a one and a half hour consultation. There is weekly treatment following the consultation, at approximately £40 per treatment.

DR. BYRON HYDE (private treatment). Dr. Hyde is a Canadian doctor who specialises in M.E. He does treat patients from abroad and comes to the U.K. every year. It’s possible to see him as a patient in the U.K. However, depending on the availability of the tests in this country that he wants carried out, he may require the patient to go to Canada (expensive). He would want to work with your usual doctor.

The telephone number of Dr. Hyde’s clinic is: 001 613 7298995 (remember that Canada is several hours behind, if you phone).

Dr. Byron Hyde

Nightingale Research Foundation

121 Iona Street

Ottawa

Ontario

Canada

K1Y 3M1

N.B. (update as from 2014):In the past, we have advertised Dr. Andrew Wright's private clinic in Bolton, England. Currently, Dr. Wright is no longer practising as an M.E. specialist due to legislation by the GMC (General Medical Council). This is a tragedy, as Dr. Wright has helped many M.E. sufferers over the years, especially by using antibiotics for an infectious cause to their illness. Some patients say he was the only doctor who helped them with M.E. and Lyme, improving their health. The GMC charge against him appears to be trivial. Dr. Wright is now practising as an NHS GP in the Bolton area.

NHS CONSULTANTS IN U.K.

There are consultants in the NHS who treat M.E. as biomedical. However, some have requested for us not to advertise this. Please contact The Grace Charity for M.E. if you require more information about NHS consultants. (At the moment, this list is minimal; it also depends upon where you live in the UK.)

Dr. Abhijit Chaudhuri

Dr. Chaudhuri works both privately and on the NHS. He is a neurologist. He has informed us that he wishes to promote his NHS work for M.E. sufferers.

If the above extension numbers are busy, there is another extension number, ext. 2647, which may also be able to help.

As from 2014, Dr. Chaudhuri’s NHS M.E. clinic is on a Wednesday afternoon. The M.E. service is based at the hospital’s neurology clinic. His clinic is a multidisciplinary clinic, headed by an Occupational Therapist. There is a counsellor for those who may feel they need that too. If necessary, some scans on the NHS can be arranged for the M.E. patient.

A GP referral is needed for the above NHS clinic.

Dr. Chaudhuri stresses that an M.E. patient will not receive a psychiatric/psychological explanation for the M.E.

(Privately, his initial consultation is around £220 .)

Please let us know of any feedback regarding the above M.E. clinic at Queens’ Hospital.

Breakspear Hospital in Hertfordshire has also helped some M.E. patients. It is mainly a private hospital but does treat M.E. patients on the NHS if you can get a referral from your local Health Authority. They can cover many symptoms but have particularly helped M.E. patients with digestive problems and allergies.

N.B. We've had mixed feedback from sufferers regarding Breakspear. Some have found it very helpful from a biomedical perspective. However, a severe M.E. sufferer has said that the nursing team there followed the NICE guidlines and therefore used a psychosocial approach to this person's M.E. If you do decide to go there, it might be best ahead of the time that you ask for test results to be interpreted from a biomedical perspective and that appropriate treatment, e.g., supplements, will be administered if necessary.

DISCLAIMER: Although the Grace Charity for M.E. intends to help sufferers, we can't take responsibility for any ill-effects caused by the above list of practitioners, should you try them. However, we do want to hear of both positive and negative experiences of the above and other practitioners.

7.Biomedical Research

Biomedical research is currently being done by the following organisations:

Please see also Useful Links (under Useful Documents page) for other contacts.

10.Prayer

Get people to pray for you and your carer. Peace of mind and hope are essential for you both as you battle your way through this illness together.

TESTS FOR M.E., PRIVATE AND NHS

Currently, there is no specific test to diagnose M.E. but there are many tests which can contribute to making a positive M.E. diagnosis. Tragically, the latter are not generally available on the British NHS. In fact, the opinion from the NICE Guidelines is that M.E. is a diagnosis only after excluding other possible illnesses.

Most CFS/ME ‘clinics’ on the NHS will probably want the following tests done before attending their ‘clinics’:

(Please note that the above NHS tests do not give a positive M.E. diagnosis but are used to exclude other illnesses. Although M.E. sufferers often have problems with blood sugar, thyroid etc., the above tests may not be of the correct type to perform for M.E. thyroid, blood sugar problems etc. ‘Standard tests’ are often returned with a ‘normal’ result for M.E., so keep this in mind if you feel discouraged. It may still be useful to have some of the above tests done though, if offered on the NHS.)

Although the above tests are often requested by a local CFS/ME ‘clinic’ to be done before attending there, please note that our charity does not generally recommend the current NHS ‘clinics’ for CFS/ME as they tend to promote Graded Exercise and Cognitive Behavioural Therapy [which is often linked with increased exercise]. This approach usually worsens the symptoms of sufferers of true neurological M.E.

What tests can you try and get on the NHS?

1.Virus test.

As most (perhaps all) M.E. cases seem to be triggered by a virus, a viral test would be helpful to substantiate the onset of your illness. Again, this will depend on how willing your GP is. The main types of viruses which cause M.E. are enteroviruses (e.g. ECHO, Coxsackie). There is also an opinion that Herpesviruses such as HHV6 (Human Herpes Virus 6) and other viruses can trigger M.E. as well.[1]

Viruses can be difficult to show up in tests; for me personally, I had to have 8 months of regular blood tests on the NHS before an ECHO 2 virus was discovered. (I had a persistent GP, thankfully.)

If a virus is not found, this doesn’t necessarily imply that the M.E. was not triggered by a virus. Did you have tender neck glands, sore throat etc. at the start of your illness? These could be symptoms of a virus.

2.Blood test for Natural Killer Cells.

M.E. sufferers tend to have a low number of natural killer cells. This blood test needs to be tested per cell for low NK cell cytotoxicity. [2]

3.High Sensitivity CRP test.

This is a blood test which can show up inflammation and infection. It’s recommended to have for M.E. patients by Professor Malcolm Hooper.

4.IAG test

This is a urine test which determines a leaky gut.

Clinical signs to help diagnose M.E. on the NHS

1)The Romberg Test:this tests for brain stem function.

2)Tilt Table Test: this tests for circulating blood volume; it must be done professionally as a patient’s heart can stop. There is an alternative test called ‘a poor man’s tilt table test’ using blood pressure and pulse readings.

N.B. Any test for an M.E. patient may cause a deterioration of their health, so must be done cautiously and professionally.

For more information on tests and clinical signs to help make a diagnosis

of M.E., go to Jodi Bassett’s site at A Hummingbird’s Guide to M.E.

www.ahummingbirdsguide.com Go to the home page and click on M.E. tests. Jodi describes both scientific tests and physical signs on examination to help make a diagnosis of M.E. Again, sadly, the majority of the scientific tests may have to be done privately and not on the NHS.

Private tests

Unfortunately, more M.E. sufferers are feeling that they have to go privately for tests to help confirm their diagnosis of M.E. This is unfair for sufferers, as many tests could be done on the NHS but sadly the trend is for this not to happen.

Please see our page ‘Practical Guidance’ for more information of private tests from doctors such as Dr. Sarah Myhill (U.K.) who offers the Mitochondrial Function Profile Test; also Dr. Byron Hyde (Canada) who offers brain scans.

There is a private clinic in Kent known as The Celestine Clinic which some M.E. sufferers have found helpful. It uses a method called B.E.S.T. testing

(Bio Energetic Stress Test) which is an electrical testing method; this can show up weaknesses in the body, apparently. (Before considering this test, ask yourself if you have an electrical sensitivity as the test may exacerbate your sensitivity.)

Although some sufferers have benefitted from the endocrinological (hormonal) advice given by this clinic, it is rather unsettling from an M.E. sufferer’s point of view that a large hypnotherapy sign greets all patients at the entrance!

Diagnostic tests (proving that someone has an illness) for M.E. do not exist on the NHS. There are several potential diagnostic tests, world-wide, which have been funded privately.

1)The ATP Profile test

In the U.K., Dr. Sarah Myhill has worked on a mitochrondria test for M.E. called the ATP Profile test; this has been in conjunction with Dr. McLaren-Howard of Acumen laboratories and Dr. Booth. This test is offered via Dr. Myhill’s clinic (as part of the Mitochondrial Function Profile Test) and can be done through the post. Please see www.thegracecharityforme.org/guidance.asp

The ATP Profile test was published in a peer reviewed medical magazine, The International Journal of Clinical and Experimental Medicine (2009) 2, 1-16.

2)The M.E./CFS H2S Urine Test

This has been worked on by Prof. Kenny De Meirleir’s from Brussels, Belgium. It detects amounts of hydrogen sulphide (H2S); an excessive amount may indicate a gut dysbiosis (i.e. wrong bugs in the gut). It appears that M.E./CFS sufferers tend to have a gut dysbiosis. The test can be performed at home, apparently, with a kit priced at around £13.

My personal opinion (and that of others) is that although this might be a useful piece of information for a sufferer, I don’t believe it is a diagnostic test as such because M.E. is a complex illness. Also, the test may indicate another bowel problem which is present other than in M.E.

This test may be preferable for an M.E. sufferer rather than a ‘breath test’ which can also be performed (sometimes on the NHS) to diagnose an overgrowth of bacteria in the small intestine.

3)Kerr’s work with gene expression

Dr. Jonathan Kerr, working from St. George’s University Hospital, London, has discovered since 2005 that CFS patients have different gene expression patterns compared to other illnesses and controls. This important work (once funded by the CFS Research Foundation, UK) appears to have been halted. There is promise that this work could be a diagnostic test for CFS. (Please note that this particular research is referred to only as CFS, rather than M.E. It is still important research, though.)

4)SPECT scans (Single Photon Emission Computed Tomography)

The abnormality of SPECT scans for an M.E. sufferer appears to be one of the most hopeful as a diagnostic test. Indeed, some doctors are confident enough that this is already the case and has been for a long time.

SPECT scans have been shown to demonstrate low blood flow to the brain in areas unique to M.E. (distinguishing M.E. from depression).

Dr. Byron Hyde from Canada is a keen user of SPECT scans to help diagnose patients with M.E.

The same results with SPECT scans in M.E. patients has been found by both De Costa (1995) and Schwartz (1994).

Please let us know if you do get any of the above tests on the NHS or if you manage to get other tests done, and if they have or have not been helpful. Thank you.

Compiled by Catherine Ashenfelter

[1]A new and simple definition of Myalgic Encephalomyelitis and a new simple definition of Chronic Fatigue Syndrome 2006, by Dr. Byron Hyde pp.9,18. www.nightingale.ca Dr. Hyde believes that M.E. is almost always caused by enteroviruses, whereas other doctors widen the cause to other viruses.